Join BetterLife FSHD Today!
Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
The Care Connector
Find resources near you by Anna Gilmore, FSHD Society Among the most frustrating interactions you can have with a new healthcare provider is realizing that they don’t know anything about your condition. For a long time, the FSHD community has asked for some kind of database of providers who have any level of FSHD knowledge….
Springbok Analytics Leads MRI Innovations in MOVE Pediatric FSHD Clinical Study
Springbok Analytics Leads MRI Innovations in Multi-Site Pediatric FSHD Clinical Study AI-Driven Muscle Analysis to Support MOVE Peds Study, Advancing Trial Readiness for Pediatric FSHD CHARLOTTESVILLE, Va., March 17, 2025 /PRNewswire/ – Springbok Analytics (www.springbokanalytics.com), a leader in AI-powered muscle analysis,…
Upcoming Events
Featured
Feeling Fit with FSHD – Exercises with Lonwabo
Zoom Virtual Meeting , United StatesSpecial Topic: Demonstrations and illustrations of suitable exercises for all severities of FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo joins us once again for this follow up from his last month’s Feeling Fit discussion. This time, he...
Women On Wellness
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our...
FSHD Straight Talk with Tim Hollenback
Facebook, YouTube, and anywhere you listen to podcasts , United StatesOn the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.